Tuesday, September 5, 2017

Loving Gummy While Dementia Storms the Castle

This weekend I hung out with writers. We talked books, writing, slept on couches, went to see The Glass Castle (debated the movie versus the book version), and in an unexpected twist, we all joined family for a Gummy lunch out. She wore her Steelers jersey. It says GUMMY on the back. The staff preps her on Sundays because Juan often takes her out to eat. 

Having a table full of people is one of her favorite things. It still is, although she's not often sure who is who or even if she knows us at all. The jokes are familiar to her and she accepts the love just the same.

Someone asked me afterwards, "Was this a good Gummy day, or a bad one?" 

When you're not used to dementia, how do you know what either looks like?

The thing is, that's a tough question.

Maybe because any day or moment in which Gummy isn't in the ER, angry, or in the depths of despair, is a good day or moment now.

It might not look like a good day, but it is.

She ate her salad and her food with little help. Occasionally she joined the conversation. Lowering my expectations has become a game plan.

Maybe I should say lowering my expectations has helped me get through this. Finding joy in those rare moments when Gummy remembers a name is how I'm rolling. If she smiles, it's a win. If she doesn't remember or doesn't smile it's not a loss. It's a time to look for something else to put on the joy list.

Throwing caution to the wind and taking her out in public is our Russian Roulette Gummy Game Plan. 

Not all days are good days to go out, but some are.

Being out among people going about their normal lives is good for extroverted Gummy. She slips into autopilot. She's doing something normal too. I can see her energy level rise.

Sometimes I take her out of memory care in a wheel chair and she walks back in. Not always. Positive energy isn't enough to make her stop forgetting how to walk. Positive energy can't help her remember. But it can stop dementia from draining her in any given moment. It can help her find her smile.

Being left alone in her confusion drains her. 

Watching life and laughter recharges her, especially when she's the one getting a hug or kiss.

If Gummy's outing goes poorly, therein the problems lie. Then getting her back to a comfortable place is paramount. Thank the heavens her comfortable place has become her room at memory care. 

When she returns she at first doesn't know this place. It's been going on a year, and she doesn't recognize the building from outside.
     Now where are we?
     Am I getting out of the car? Nobody told me.
     What is this place?
     You're not dumping me here, are you?

Physical Therapy rearranged her room again. She never notices. The idea is to make it as safe as possible in the hopes she won't fall. My biggest win this entire summer has been getting her a new chair she actually uses. 

Clothes, toothbrushes, even soap, can be ignored. Maybe she doesn't like it. Maybe it's not familiar so she won't touch it because she thinks it might not be hers. Maybe it is familiar so she packs it up and hides it. After the doctor visit this week, she sat in her new chair in memory care and talked to me. When I swung by for an impromptu visit the next day, she sat in that chair and ate a few bites of pizza I brought her. When I didn't come by because a rashy virus has been taking down family members like an army of Orcs, she sat in that chair and talked to me on the phone.
     I haven't seen you in so long!
     It hasn't been that long, Gummy!
     What are you talking about? It's been at least ten years!

The doctor said she needs more salt. Her blood pressure drops when she stands. Gummy loves what I call her pizza potato chip diet. When I visit I bring one or the other. 

Spoiling a child is a bad idea. I don't see the downside to spoiling someone with dementia.

Seize the day?
Hah. Seize the moments. Seize the nanoseconds. Seize whatever you can find despite the fact that we're laughing while the enemy is at the gate. 

I mean if you look hard enough everything has a silver lining.

The castle is under siege, but you can eat whatever you want until the dragon fire gets to this room! I mean this side of the room. How about this chair? 

Now I sit on her bed, and she sits on that chair and we talk. Her words are stifled sometimes, and they evaporate on her. She doesn't always know who the heck I am, but we talk anyway. 
     The guys are driving me nuts, Gummy.
     My car broke down today, Gummy.
     The baby has a fever, Gummy.
Semantics don't matter. We're two women talking. For a moment she focuses, and even when she doesn't know me this conversation happens. 
     Guys do that, you know. Mine drove me nuts. Do you know where he is?
     What kind of car do you have? I don't know where my car is.
     What baby? Is she okay? Is she here?

There's less space to maneuver in now, but we tuck our feet up under us. I've been writing by hand lately, so the tendon problem with my middle finger is flaring up again. It reminds me how to deal with dementia once more. I don't think Gummy has forgotten that part yet. Even if she does, I've got her back.

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